This blog shares the daily life of a family living with two Type 1 diabetics.

Welcome

I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Thursday, February 7, 2013

It Takes A Village

I don't know how patients do it alone. I truly think I had Caregiver Burnout last month. And, I think Jessica had Diabetes Burnout. We were both just so sick of every check, and dealing with every high and low. Math tests that had to be taken during recess due to high blood sugars. Site changes, Dexcom changes, Dexcom alarms, the food scale, guessing at carbs, packing all the ridiculous diabetes baggage for a trip, security fiascos, and the list goes on and on. I was feeling unusually down, and I think Jess was too.

And then something wonderful happened. It was time for the Children With Diabetes Focus on Technology conference. Home. Friends. No explanations necessary. No food scale necessary. Inspirational people. And, phenomenally inspirational talks by Sebastien Sasseville and Ed Damiano.

I came back from the weekend refreshed, full of new energy and ideas. And, Jessica came back happier and less angry. It truly takes a village.

And, this week when the sneaky "I hate diabetes" moments have snuck into our lives, I have instead thanked diabetes. I can't believe the wonderful people I have met because of diabetes. Our circle has expanded in huge ways that never would have occurred had Jess not been diagnosed. I have watched my T1 hubby become hopeful again, happier, less alone. I don't think we ever would have attended a CHILDREN with diabetes conference had Jess not been diagnosed. But, it turns out that Children With Diabetes is the perfect circle of support for ADULTS with diabetes. We have met so many absolute heros who have been living with Type 1 for 20, 30 years and more. They are inspirational. They provide support to our whole family. They give me perspective. They lighten my load. They share a kinship with my T1 hubby.

So many "wow" moments, so many inspirational moments. Below are just a few of the tweets from the conference:

"Avoid miscarried helping."

"No one is truly independent. The hallmark of being an adult is knowing when you need help and asking for it."

"Great response to teenagers: how'd that work for you?"

"Teasing or bullying hurts our (parents') hearts more when it is about diabetes."

"Ask your child how they would like you to ask them what their blood sugar is."

"Give your child the gift of struggle."

"Fair is something you buy tickets to. The rest is called life."

"Preschoolers may think they did something to cause diabetes."

"My daughter is not a mouse. If she was she would have been cured 300 times by now."

"Pre-bolus and check one more time a day."

"The person with diabetes who knows the most lives the longest."

"We need to change to a prevention minded society."

"You can set the bar, but it's important to know that bar moves."

"It's ok if diabetes slows you down, but don't let it stop you."

And, perhaps the best quote to end with (from Sebastian Sasseville): "Do not regret having diabetes. Greatness always come in the face of obstacles."

This is a ridiculously hard walk, but you don't have to walk it alone. It takes a village to raise a Type 1 child. And, it takes a village to be an adult with Type 1. Thankfully, that village exists...in the form of a wonderful organization called Children With Diabetes.

My Maddison has been going through burn out too lately, luckily, I am doing well so I can pick up the slack! So, did they tell you how we should react when kids go through burnout? So you let them step back (age 12) and take over some responsibilities or do you keep pushing them to work past it? I never know what is right, and I always feel like I handle it all wrong :(

Kelly- I'll share some good advice I have gotten both from the conferences and from my husband. At the conference one of the speakers recommended that you regularly schedule "I hate diabetes days." The speaker has had diabetes something like 50 years. He regularly picks a day to just mourn having diabetes. He buys a thing of ice cream and watches a couple of movies. He tells all of his friends to call and tell him how amazing he is for how he handles his diabetes. He said it rarely lasts more than 2 hours and then he feels better. Allowing time to be mad and grieve seems to be important.

My husband has shared with me how much anger and how alone he has felt at having to handle his diabetes all by himself. He was diagnosed at 17 and so from the beginning it was his disease. It is too much for any one person to handle. It takes a team. He is so incredibly thankful if his Dex alarms in the middle of the night and I check his blood sugar for him. I measure the carbs for his meals and he appreciates this so much. I have already told Jessica no matter how old she gets I will be there when she feels she just needs a break. I seriously will move in for a week when she wants me and take over her care just to give her a short break. I personally don't see any issue with you helping your daughter. I would call it something like "diabetes break week" so you both know it is a limited time. But, seriously who can really do everything required day in and day out without burning out?

There are no right or wrong answers in parenting these amazing type 1 kids. I know you do not handle things all wrong. Your daughter is lucky to have you.

Ive heard the speakers that recommend the I hate Diabetes days...we kinda do that once in awhile...I know sometimes I'm frowned upon by friends or family for doing too much for Maddison sometimes...but OH WELL!! I do what *I* know is right for us :)